I have access to Doxycycline however my Lyme disease test came back negative

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I know I have lyme disease, I have had almost every symptom including the bullseye rash, and the docs are telling me its down to anxiety, but I have never been an anxious person, and I have nothing to worry about, Lately the pressure in my head and the brain fog has made it very hard for me to stay focused in uni and now I am having massive memory problems and i'm finding it hard to speak to people, usually I am very smart and very social. I've been having chest pains and heart pains recently and I think its really getting bad now.

I have access to doxycyline, not throught any doctors or anything, I'm just wondering if doxycycline is the best abx to start of with and how many should i take a day and how many weeks/months should I take it for.

My bullseye rash was 124 days ago if that helps, as I hear its harder to treat later on.

Are there any other abx I should get, My main symptoms are neurological but I have been getting other symptoms aswell.

Symptoms since start: Insomnia, Vomiting, Headaches, Brain fog, Aches, Panic attacks, Anxiety,Dizzyness, Constant head pressure that hasnt gonw away for 2 and hakf weeks, Cant concentrate, Feel out of sync with reality, Muscle spasms in various places, Sensitivity to light, Eye floaters and flashes, Back pains, really stiff neck.

The insomnia only lasted a week and I havent vomited for a while.

One panic attack which was the first i've ever had in my life, left me in hospital, I've had three since then.

I've also taken up a lyme diet and I have been feeling a tiny bit better but I still have all the symptoms

Thanks for any advise

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  • Posted

    I'd take the doxy asap, 100mg twice/day is the usual dose.

    Even the manufacturers of the lyme tests say that a negative test should not be used definitively to diagnose the patient, ie-you do not have lyme, the diagnosis is to be based on symptoms. Supplement at different times with a good probiotic.

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    • Posted

      How long for? And Should I buy any more/different abx I have 100 doxycycline 100mg tablets at the moment
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    • Posted

      For 2 weeks, if positive response i'd follow through to 4 weeks. Then if you improve further get in touch with your GP. Doxycycline is the best abx for lyme.
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  • Posted

    Hi.  I am so sorry that, as usual, when the medical profession doesn't know what's wrong, it is because the patient has anxiety, depression, hypochondria, etc.  I have had similar issues with GP's in particular, they just don't listen to their patients, who generally know their own bodies best.

    I have no medical background, just things I've learned whilst trying to diagnose my own health problems.  Do you know what blood tests you had?  They usually do the ELISA test first and, if that is positive, follow it up with the Western Blot test.  I don't think it always shows up though. If you have had the bullseye rash that's normally a pretty clear indication.  If you could afford it, I would pay and go to see a Lyme specialist (I cannot recommend anyone as I don't have Lyme.)  The other option for testing, although it's a bit extreme, is to have a lumbar puncture which can also show if you have Lyme (I have had a couple myself, they are not as bad as they sound.)

    If you have Lyme it should have been treated aggressively with antitbiotics early on, and I don't know what antibiotics they prescribe.  Sorry.

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  • Posted

    Where do you live?

    There are 2 clinics I know of in UK, one in Hemel Hampsted and another in Winchester.  If you live within a convenient travelling time to either I would recommend you consult one of the doctors there.

    Doxycyclin and clindamycin are supposedly the drugs of choice but I have been told for neurological symptoms Penicillin is best.  Thants why I recommend seeing one of the doctors before self-medicating.  The clinic in Hemel deals with MS, Lyme, ME, Fibromyalgia etc and are very thorough and definitely won't ignore you.  The clinic in Winchester is just one doctor who specialises in Lyme disease.  Both clinics are private with a 2 month waiting list although I do beleive the doctor in Winchester has an NHS clinic too.

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  • Posted

    Just to let you know that the special Lyme Disease Clinic set up by Dr Matthew Dryden, based at the Royal Hampshire County Hospital in Winchester, closed in May 2014, only six months after opening, due to lack of funding. As far as I know, he still practices at the BMI Sarum Road Hospital, WInchester.  
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  • Posted

    I suggest you start the Doxycycline immediately. 100mg twice a day. Cut out sugar and look on the internet for more lyme diet suggestions. I found making hot ginger infused drinks very helpful. I also bought Manuka honey from Boots, as it has antibacterial elements. My diet included lots of protein. Hope you feel better soon. Oh, and when you start the Doxycycline, read up on the Herx reaction as the bacteria start to die off. It can feel awful, but keep going as it's all part of getting better and soon passes.
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